Thursday, October 23, 2014

Lucky. October, 2014 (in which i attempt to write again after a many year hiatus)

i haven't written anything, really, in years.  not even music.  i have been tired.  i needed a rest.  and needed to focus all my energies on being a mom.  but i feel some sort of obligation to make a breast cancer awareness post.  i don't even know how to begin.  so this is probably going to be rough around the edges. forgive me if i ramble.  or start drawing in crayon.  or creating diagrams with playdoh.  it's what i do now. 

october 2014 finds me in an entirely different state of mind than pinktobers of yesteryear.  i am a mom.  of a toddler girl.  i recently moved halfway across the country to a new life in sunny southern texas.  hill country.  where everyone is literally always smiling and giving you a hug.  so why i want to drudge up old wounds, i don't know.  i just think it's important to tell our stories. 

let's roll the clock back to 2002.  i was 31.  i was diagnosed with breast cancer.  i was lucky.

winter of 2001,  my husband (then boyfriend) found a lump.  in my left breast. near my nipple. and thought i really needed to have it checked.  up until then,  i was afraid to do self exams.  my grandmother had died of breast cancer. so i convinced myself that if i didn't do an exam, i wouldn't find a lump, and i wouldn't get cancer and i wouldn't lose my breasts.    i was young.  and worried about looks.   i thought that loosing a breast would be the absolute worst thing that could ever happen.

so in early 2002, i made an appointment with my doctor.  she performed an exam and couldn't find the lump.  i had to show it to her.  which made me cringe.  i was still in the don't feel, don't get cancer stage.  she finally located the lump and wrote me orders for a mammogram and ultrasound.

i showed up at the hospital with my paperwork, expecting to get my first ever mammogram.  but my plans were thwarted.  even though i had a script from my doctor, i was denied a mammogram. i was told that young breasts are too dense and nothing will show up.  i was offered an ultrasound instead.  and was told by the hospital that if there was something worth finding, an ultrasound would pick it up.  well, it didn't.  luckily, i had a follow-up with a surgical breast oncologist.  she didn't think that the lump was much to worry about.  especially since the ultrasound was negative.  and suggested we do a surgical biopsy to remove it.  if it was cancer, then it would be gone.  if it wasn't, it would still be gone and i wouldn't have to worry about it. 

well, hello.  i was a young woman.  i had never had any type of surgery or stitches or anesthesia.   i'd never even broken a bone.  and i really wasn't sure i wanted someone cutting on my nipple.  especially if there was probably nothing wrong with it.  what if i lost sensation?  what if it looked crooked afterward?  would i be able to breast feed someday?  no thank you..  i needed to think about it. 

well, the more i thought, the more i worried.  and after a month or so, i made another appointment with the surgical oncologist.  i asked her, before we talk knives, is there any way i could get a mammogram? even if nothing showed up.   just to cover all bases.  you know, before i'm scarred for life.  much to my surprise, they did mammograms right there in her office.   and much to both our surprises (me and my doc), the mammogram showed what appeared to be cancer.  lots of it.  tiny spider webs of calcifications.  in 3/4 of my breast.

from there i had a core-needle biopsy to confirm cancer.  but it looked promising.  DCIS (ductal carcinoma in situ).  which means the cancer was still within ducts.  had not become invasive.  is considered stage 0.  and was, according to the pathologist who gave me my results over the phone while i was at work, "the best kind of breast cancer to have".  like there is a good type of cancer?

the morning after i received the biopsy results, i met with my surgical oncologist.  unfortunately, since my cancer was so widespread, i was told that i would need a mastectomy.  a what? holy shit!  i went from being afraid of a teeny scar by my nipple to losing my whole breast.  this was just devastating. 

april 1st, 2002,  i had my mastectomy.  a modified radical mastectomy.  my breast was removed along with a bouquet of 10 lymph nodes (3 of which contained cancer), and 2 tumors that were not palpable.  the hidden tumors were far back close to my chest wall.  oh, and that nipple lump?  well, it turned out to be benign.  i really think it was my body's way of signaling an alarm that something was dead wrong.  i was lucky.  if i wouldn't have insisted on the mammogram... well, i'm afraid i would not be here today to tell you my story. 

i was lucky to have a boyfriend who stuck with me.  and took me to my chemo appointments. who shaved my head when my hair started falling out. and who told me i was beautiful when i was bald.  i know women who's husbands/boyfriends didn't stick around.   i was lucky to have a boyfriend who did not make me feel the least bit self conscious when i wasn't wearing my prosthetic breast.  who said it was up to me whether i wanted to get reconstruction.  that he found me attractive either way.  a boyfriend that put up a girlfriend that had to go through a chemical induced menopause in her 30s.  it wasn't easy for me.  but i'm sure it was no parade for him.  the hotflashes, mood swings, and lack of sex drive.  i was lucky to have a boyfriend that proposed to me while i was laying in bed with surgical drainage tubes hanging from my back and chest.  the remnants of my 8 hour lattisimus dorsi flap breast reconstruction  (muscle and skin from the back are moved to chest to create a new breast). 

i'm lucky to have had hair for our wedding.  in italy.  and to be surrounded by family and friends.  best day of my life.  up until then.

i am lucky to have been able to naturally conceive a child after the harsh chemotherapy and radiation and the myriad of post-chemo drugs i have had to take over the years.  i am lucky to have given birth to a beautiful healthy child.   second best day of my life. 

i know i am lucky by still being alive as a 12 year survivor. but i'm going to be honest.  i'm tired.  and every morning when i wake up, i am in pain.  physical pain.   a recent study has shown that the chemo i received speeds up the body's aging process by an average of 15 years.  so i'm pushing 60 right now.  and feel like it.   i have developed a number of diseases associated with the elderly (degenerative arthritis, pernicious anemia, multiple basal cell skin cancers, multiple precancerous colon polyps, and hypothyroidism to name a few).   if i had a nickel for every time the doctors said, "you are so young to have this." 

i know i'm lucky to be here.  but it sure doesn't make me feel better when i think about all the sisters i have lost along the way.  too many.  too young.  too soon.  what about their families?  their husbands and children?  i don't understand.  any of it.   

and as far as all the pinktober merchandise, it does raise awareness i suppose.  but if you really want to help, donate directly to a charity of your choice.  i prefer the ones that either help cancer patients/survivors by assisting with medical costs, transportation, food, rent, & utilities, etc..  or the organizations that are funding medical research.  we need better treatment plans.  we need cures.  not just one.  but many.  cancer is so unique to each patient.
i will leave you with this painting i did before my reconstruction.   it is titled "lucky" and it accompanies a song i wrote by the same name.  it's good to have an outlet for difficult emotions. 

lucky recorded by wormwood scrubs 2005


MaryJo Gruber said...

I am lucky to know you. I am lucky to have been able to support you. I am lucky to have been able to celebrate with you at your concert, your wedding, and your shower. I am lucky to call you friend.your strength and courage amazes me.I thank you for being you.

larissa said...

Thank you, Mary Jo. I'm lucky to have you as a friend. And I'm still overwhelmed by the way the whole Clayton School District Business Office went above and beyond to offer support. Xoxo

Julia Gordon-Bramer said...

Wow. Such a journey. As we get older it seems I am seeing it more and more among close friends, acquaintances, and family. So far, everyone I know has survived--even some really tough, aggressive breast cancers. I want to say that they're all so lucky, but the truth is that it is not luck, it is improvements in medicine and the ability to be blessed enough to have good medical care. I am so happy you are one of the survivors. Even better, you have true love and a beautiful child and what looks like a fairy tale farm life. It had a hell of a price tag, but the best things often do.

larissa said...

Thanks, Julia. Yes it's a a heavy price but worth every penny for leading me down the road that has brought me to Wimberley with my daughter and husband.